Passing the Baton on…the importance of sharing the lived experience of raising a child with Down syndrome

This week, as I was scrolling through my newsfeed on Facebook I noticed a screen shot posted by a friend of mine in America. His name is John and he is dad to the very adorable Owen, who has the coolest flop of wavy hair and also happens to have Down syndrome. After I read this screen shot, I was taken over by a moment of lovely clarity and enormous pride. My mind was cast back to when I first met John online and the enormous impact he had on me when he got in touch.

John and Owen - photo provided by John

John and Owen – photo provided by John

I started this blog back in March 2013. Wade was 14 months old and I was just starting to find my way in this new world.
Having an unconfirmed prenatal diagnosis for Down syndrome meant 9 months of complete unknown. Life consisted of percentage chances of this or that and a long list of maybes that may or may not be relevant.
I remember being consumed by wanting to know what my future would look like. On the whole I was comfortable with the idea of raising a child with Down syndrome but it was a process to go through all the ifs, buts and maybes about what that would entail. Some days were easier than others and some days were harder but when I looked at the roller coaster of emotions I had been on during my pregnancy, I realised that I had come out the other side relatively unscathed and with a positive outlook for my future.
I was probably a bit naive to some of the challenges ahead of me but once I met Wade, I knew I had been through an experience that you could only understand once you had done it yourself.

Once I came out the other side, I wanted to pass that information along so that other people might find a story they could connect to as well. While I expected that family and friends would be curious and want to know a bit more about my story, I was really hoping to reach other parents who had received a prenatal diagnosis like me and were looking for a story they could relate to.
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It’s not the 60s anymore…it’s time to update the advice given to parents about Down syndrome

I was listening to a story recently of a woman who became pregnant with her first child when she was just 16. My mouth sat open wide as she explained how hard she had to fight to keep her baby, being a “good Catholic girl” in the 1960s.
It was the norm back then. Young mothers pulled out of society and whisked ‘away’ somewhere to either have a termination or disappear for a while until the baby was born only to be forcibly removed and given up for adoption. These sorts of practices were commonplace and considered to be ‘for the best’. This woman had all sorts of so-called experts in her ear, from the local priest, the doctors, family and friends weighing in on what was best for her, the baby and ‘good taste’ apparently.
It’s not like that anymore. Society has realised over the past 50-60 years that it’s not the end of the world if a young mother has a baby, actually. We know that tearing children from their mothers and raising them in foster homes or boarding houses away from them is not the recipe for a well-rounded upbringing.

We know that so we don’t do it anymore.

In the story, the woman recalled how her son was called a “bastard” purely for being born to an unwed mother. She talked about how little support she had and how hard it was back then. This woman was a trail blazer, refusing to be told what was best for her and being a part of change that would bring us to the better place we live in now.
No one looks back at those times and considers it ‘Best Practice’. No one looks at the damage done to young mothers and their children as a result of forced separation and uses that to advise young mothers today.

We know it is better to support parents through challenges rather than demonising them for their choices. We know that when we stop telling children they are ‘worthless bastards’ who should never have been born, they grow up having more pride, confidence and control over their lives.

When a young girl becomes pregnant at 16 today…we don’t go looking to the 1960s for advice…

….so why are we still doing it with Down syndrome?

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When parents are told prenatally their child has or may have Down syndrome, the information and advice given by many health professionals is wildly outdated and skewed heavily on the side of Doom and Gloom.
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Is my story just a story…or is it useful?

I had an interesting experience a while ago when a person who knew my story very well and was completely on board with my philosophy about raising a child with Down syndrome enthusiastically told me that she was pregnant and all of her tests had come back ‘normal’ which was a huge relief to her…. I was happy for her, of course, but I couldn’t stop myself from thinking…

Do I achieve anything by sharing my story?
Or do people just grab a bucket of popcorn, read it and think quietly to themselves…
“Thank goodness that’s not me”?

Is the reader leaving with a different perspective or do people just like reading stories about other people’s lives as entertainment then move on?

There’s two main reasons why I choose to make my writing public rather than a private journal of my thoughts. The first is to provide another voice to the parents out there who have just entered our little club. There are a lot of stories out there but I guess I wanted to provide the type of voice that sang to me in those early days. I needed to hear from parents who could explain to me in minute detail EXACTLY how I was going to wrap my head around this thing. I wanted positivity that wasn’t wrapped in a sugar coating and a reality check of the challenges with practical advice, not wallowing in the depths of despair. I’m not a religious person so unfortunately trusting in God was not going to help me much either. It was also very helpful to hear from parents who admitted their faults and swore a bit…..!! I believe that a variety of voices are really important and no one gets all their information from one source but I hoped that my story and my style might connect with some new parents at a time when their heads were swimming after diagnosis and provide them with a port in the storm.

Being told prenatally that your child may have Down syndrome is a shock. It’s an even bigger shock if the only thing you know about Down syndrome are outdated stereotypes and the cold, hard medical information falling unemotionally out of the mouth of the doctor standing in front of you. (This was not my experience and I am forever grateful to my midwives for their compassionate professionalism with us but it is the norm for most parents, unfortunately…). I hoped, that if people found themselves in a similar situation, they might have a lot more up to date and positive information available to them after reading my story so that a diagnosis of Down syndrome did not have to be a bad thing….just a different thing. I hoped that people might be more empowered to make their own minds up about how they feel rather than feeling pressured by the medical world to see their pregnancy as a long list of ‘complications’.

The other reason I write publicly is pure self interest…. I want to make the world an easier place for Wade to live in. I am realistic enough to know that unless society’s attitude toward disability changes, it doesn’t matter how much work we do to give Wade the life skills he needs to exist in this world, he will never be truly accepted. I want to show that people with Down syndrome are more capable than people might think. To dispel some myths and remove some barriers so that with more understanding comes more acceptance and Wade stands a better chance of leading a life he deserves.

I wanted to join the revolution of new parents who are joining together to tell the world that raising a child with Down syndrome is not the end of the world and has its own unique rewards and benefits as well as the challenges.

One trap that you can fall into when you write in the disability world is remaining within that world….preaching to the choir. It’s wonderful to write amongst like minded people with everyone nodding in furious agreement about the topics we raise but I am really interested to find out what effect my story has had on people with little to no previous experience of Down syndrome in their lives.

So…I am crazily bravely going to ask you to tell me….

Has my story changed the way you view Down syndrome?
If you were to meet a person with Down syndrome now, would you treat them differently than you might have before?
Do you have a different view on the inclusion of people with a disability into schools/workplaces etc?
Have you changed the language you use to speak about people with a disability?

This one is very personal, but….
Has my story changed how you feel about potentially having a child with Down syndrome?
Would you feel better informed when dealing with doctors during a pregnancy now?

I guess I just want to know if personal stories can affect change or if they are just a good read…..

A few important points about this…. This isn’t a fishing exercise for compliments, (although I’ll gladly accept them…!) I am comfortable accepting difficult and challenging responses too and I will approve all respectful responses on the post. If you would like to contribute without your comment being published then say so at the bottom of your comment or you can email it to me instead. I will probably write a follow up piece at some stage discussing the range of responses (assuming I get some!) but I won’t identify anyone who wishes to remain anonymous.

If I receive any trolling or hate speech which is obviously intended to offend it will not see the light of day and I will spend as much time thinking about it as it takes me to push “delete” so don’t bother wasting your time…

I got this idea from a wonderful blogger Jen Jacob over at Blessings Beyond the Ordinary who does amazing work supporting new parents by co-writing a book “Unexpected”and co-establishing an online resource “Down Syndrome Diagnosis Network” in America. Thanks Jen….

What do we Lose if we “Cure” Down Syndrome?

Yesterday morning I heard something that really made my blood boil for the first time since Wade was born. I got into the car to hear a local celebrity scientist on the radio discussing an item from the day’s news. Recent research has developed a technique for potentially shutting down the extra chromosome in the cells of a person with Down syndrome. The short term implication is the potential to develop new gene therapies to treat some of the health issues more commonly associated with DS such as hypothyroidism, leukaemia and early onset Alzheimer’s. The wider implication is that this technique may be used to ultimately turn off DS in the embryonic stage effectively “curing” it.

It wasn’t this in itself that made me angry, it was the description this scientist gave of Down syndrome. She called it a “devastating” condition. There was joy in her voice as she described how this discovery had the potential to eradicate DS all together. And I thought to myself…this is my son they are talking about here. Maybe I’m just an over protective mother ready to leap to the defence of my child (well, I was when I fired off my aggrieved text message into the station!!) but it also had me thinking about what is really at stake here.

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Part 6. Counting down the days

During the final few months of pregnancy, my emotions were pretty steady. Even though we had decided not to find out for sure, we felt better prepared to assume that the baby did have Down Syndrome. That way, there would be nothing that we weren’t expecting. I was still planning to birth at the Birthing Centre and it was a requirement that we have the baby’s heart checked beforehand.

This was understandable. The Birthing Centre is for low risk pregnancies. Babies with DS are at a greater risk of heart conditions, most commonly a hole in the heart at birth. Approximately 40-50% of all children born with DS will have a congenital heart defect. Usually atrioventricular septal defect (AVSD) or ventricular septal defect (VSD). These either correct themselves or require surgery depending on the severity. If the baby had either of these, I would need to birth at another specialist hospital. I booked in for an Echocardiogram at around 28 weeks. Now I was nervous. The baby felt fine, everything felt fine, I felt fine, but every time I’d had a test or scan so far, I’d been given bad news. I knew a heart defect was treatable but I was already a mother and the thought of the baby suffering at all was tugging at my heart strings. This brought all the same negative emotions back up. Back on the roller coaster for another ride.

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Part 5. Thoughts that got me through

My pregnancy was definitely a roller coaster of emotions where I questioned my resolve, my decisions and my sanity every time I got a new test result. But right from the beginning, all the way through till now, I had reasons why I didn’t want to test for Down Syndrome. This post is not about what I think everyone should do, it’s about what I did and how it helped me get through the turmoil of prenatal diagnosis. Even though there were ups and downs during those 9 months, by the time Wade was born, I was ready and happy and waiting there with open arms to meet him whether he had DS or not and if any of my thought processes help other women in similar circumstances then its achieved its purpose.

From the outset, I want to say that I am not fundamentally opposed to abortion. Everybody’s circumstances are different but I feel that we have a huge responsibility to think about it carefully and get as much information as possible. For me, it was important to “go there” in my mind on both sides of the argument. For me, considering all of my options and really thinking about it meant the right decision for me was so much clearer. As I contemplated my options, the right path to take kept leaping out at me. I chose to keep my baby and these are the reasons why.

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Part 4. The new normal

During my pregnancy, I was working as a waiter at Marios’, a cafe in Fitzroy. The cafe has been there for 27 years and has many regular customers who have been going there for years. It’s the kind of place where you need to get along with the customers as well as the staff and owners, as they are as much a part of the furniture. It’s one of the things that I loved about the job. I had returned to hospitality after 5 years away from the industry and I was really enjoying it. I had worked at Marios from 2001 to 2005 when I left to go and find a career. I’d had a quarter-life crisis and after racking up 10 years as a waiter, I decided I needed to do something meaningful with my life. Whatever I did, it had to be noble and worthy. That is something that has always been important to me. I have always shied away from the corporate world of money, ambition and power. I have never wanted to be defined by my job.

I left Marios’ to join the police force. (Bad choice if you don’t like issues of ambition, power and being defined by your job!!) After 2.5 years of stress, heartache and anxiety which was mainly due to the size of my IN tray of paperwork and less to do with the horrors out on the street, I resigned. It wasn’t for me. Yes, I was earning slightly more money than waiting tables but I was drowning in paperwork and the job was consuming every waking hour of mind and most of the sleeping ones too. I couldn’t find a reason to stay so I left.

Then I worked as a sub contractor for a company installing eftpos machines. The money was fantastic, I worked for a great company but again, the work was taking over my life. I worked long hours on the road only to come home and spend a lot of the night preparing for the next day and doing all my own paperwork. After that job ended, I discovered that I crave the simple life.
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Part 3. 20 week scan

Before I start telling the story of my 20 week scan, I want to tell the story of what happens when I take Wade out in public. Today I went for breakfast at Marios’ in Fitzroy, where I used to work. If you want to know what the world looks like when everyone is smiling and happy….push a pram with Wade in it. Walking along the street with my happy bundle in his blue glasses who makes eye contact with almost everyone he sees, turns complete strangers into a gooey mess. Almost everyone smiles, some people comment, a few ask questions about the glasses, children giggle at him. Trying to walk along or do the shopping usually results in me having a few conversations with complete strangers, which is lovely. I sat in the front window and sat Wade on the bench so he can look out the window. Watching people’s faces light up as they walked past the window and lay eyes on him and smile, makes me realise how many days he brightened, if only for a minute.

There’s a language warning on this one because sometimes “golly gosh darn it” doesn’t convey the gravity of the situation!

The time between my 12 week and 20 week scan was spent mostly searching forums on the Internet trying to find examples of when test results meant nothing. I would swing wildly between positions of being completely at ease with the possibility of the baby having Down Syndrome then completely in denial about it. These things happen to other people and all that. Continue reading

Part 2. 12 week ultrasound

Counting down the days to my 12 week ultrasound was excruciating. I was so excited to see my baby growing inside of me, I thought the day would never come.
After being called in, we were asked about the blood test and the dating scan. I told her that we hadn’t had either done as we did not want any Down Syndrome testing. And with that, I lay back and watched as my baby appeared on the screen. Just like that. As soon as she put the instrument against my belly, a little person appeared on the screen and I wept openly.

I watched through blurry eyes as she took this measurement and that measurement. Then the same measurement again…and again…and again. I was cooing and sighing and looking over to Mick with the look of wonderment at the miracle I was observing. The baby was kicking up a storm, wriggling and twisting all over the place.

Mick didn’t say much, and the sonographer didn’t say anything. Continue reading

The story so far. Part 1.

So, post number 1. A blank canvas. An endless sea of blank white virtual paper in front of me……..

I am starting this blog when Wade is 14 months old. So finally, after the first year is over and maybe some of the lost brain cells that drained out with my breast milk are starting to return, I have got it up and running. So many things have happened up until now and more amazing, beautiful or frustrating crazy things are happening everyday. I want to tell the story from the beginning but I will also put in little stories of things that are happening right now.

Let’s start with my favourite photo of him at the moment.

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I had wanted to have children for a very long time and when I met Mick and knew that he was “the one”, having kids was always in the front of my mind. There were things we needed to get done first like buy a house, get settled, plan a wedding and so on. It started to feel like it was never going to happen and I’m far too impatient for my own good. When I want something, I want it there and then. People always say that life is about the journey but mostly I thought that was crap. Once we finally got ourselves together to have a family, it took another 8 months of trying. I know this is actually a reasonably average time for it to take but I wanted kids so badly and every month that went by that I wasn’t pregnant, felt like torture. When I was young, I was constantly told about how easy it is to fall pregnant and you have to be vigilant!! Now, I want to get pregnant and apparently all the planets have to align while someone waves a red flag to the east or something before it will happen. I will admit to not being the loveliest person to be around during this time…. Continue reading